Side effects of stem cell transplant

Side effects can happen with any type of treatment, but everyone’s experience is different. Some people may have many side effects. Others have few or none at all.

Side effects can happen any time during, immediately after or days to months after stem cell transplant. Short-term, or acute, side effects generally develop during the first 100 days after a stem cell transplant. Long-term, or chronic, side effects generally develop 100 or more days after the transplant. Most side effects go away on their own or can be treated, but some side effects can last a long time or become permanent.

Side effects of a stem cell transplant will depend mainly on:

the type of chemotherapy drugs used

if radiation therapy was given before the transplant

the type of transplant used

your overall health

It is hard to say exactly which side effects a child will have, how long they will last and when the child will recover. A child’s body seems to handle chemotherapy better than an adult’s body. Children usually have less severe side effects and will often recover from them faster than adults.

A stem cell transplant is a very complex procedure. Side effects of stem cell transplant can be very serious or even life-threatening. The healthcare team watches people receiving a stem cell transplant very closely. They will take measures to prevent side effects and will quickly deal with any side effects that develop.

All types of stem cell transplants share some of the same side effects. Many common side effects, such as nausea, vomiting, fatigue and temporary hair loss, are due to chemotherapy or radiation therapy. Other side effects are unique to high-dose therapy and stem cell transplant.

The following are the most common side effects that people tend to experience with stem cell transplant. Tell your healthcare team if you have these side effects or others you think might be from stem cell transplant. The sooner you tell them of any problems, the sooner they can suggest ways to help you deal with them.

Infection

Infection is one of the most common early side effects of a stem cell transplant. It can be a very serious problem. Infection occurs after stem cell transplant because the white blood cell count is very low and the immune system is very weak. People who have allogeneic transplants have the highest risk of infection because their immune system may be suppressed to prevent graft-versus-host disease (GVHD). The risk of infection for all types of transplant is high until the bone marrow starts to make white blood cells, which is called engraftment. This takes 2–4 weeks. It takes the immune system 6–12 months to recover after a transplant.

Bacterial infections are most common. Viral or fungal infections can also occur. Infection develops most often in the:

mouth

gastrointestinal (GI) tract

lungs

skin

People who have a stem cell transplant need to take special precautions until their white blood cell counts are back to normal and their bodies can fight infections. Different transplant units may have different precautions and guidelines. You may have to stay in your own room with special ventilation (called protective isolation). Visitors may be limited and they have to wash their hands before they visit you. Anyone who feels unwell and children exposed to an infectious disease (such as chicken pox or measles) should not visit. Many people who receive a stem cell transplant have to follow dietary restrictions and food safety guidelines.

The healthcare team will carefully monitor you for signs of infection. Fever is often the first sign. Even if there is no sign of infection, most people are given antibiotics or antiviral drugs until their white blood cell counts start to rise. Doctors may also prescribe colony-stimulating factors (CSFs), such as filgrastim (Neupogen) or pegfilgrastim (Neulasta), following a stem cell transplant to help lower the risk of infection and speed up engraftment.

Infection can also occur long after a stem cell transplant. Late infections commonly occur in the skin, upper respiratory tract and lungs. The risk of late infection is related to:

how quickly your immune system recovers

GVHD, which is a major risk factor for infection

whether or not you need to take immune-suppressing drugs

The healthcare team will teach you what signs to watch for and what to do if they occur. You may need to take medicines if you do develop an infection.

Talk to your doctor about being revaccinated 1–2 years after the transplant. Most people need to be immunized with vaccines that are commonly given in childhood (such as polio and measles vaccines) to help restore the immune system.

Bleeding

Bleeding is another common side effect of stem cell transplant. It occurs when conditioning or intensive therapies lower the low platelet count, which reduces the blood’s ability to clot. Serious bleeding problems, or hemorrhage, can occur. The red blood cell count can also be lowered, which can lead to anemia.

The healthcare team will try to lower the chance of bleeding. They will do blood tests daily to check the number of the different types of blood cells. They will also monitor you for signs of bleeding, such as nosebleeds, easy bruising and bleeding gums.

You may need platelet transfusions until the transplanted stem cells start to work, especially during the first month after the transplant.

Anemia

Conditioning or intensive therapies can cause anemia, which is a low red blood cell count and a lower concentration of hemoglobin in blood cells. Anemia can cause fatigue, paleness and malaise, which is a general feeling of discomfort or illness.

Colony-stimulating factors (CSFs), such as epoetin alfa (Eprex, erythropoietin) or darbepoetin (Aranesp), may be given to help increase red blood cell counts. Red blood cell transfusions may also be needed if blood cell counts drop too low.

Graft-versus-host disease

The donor’s stem cells are called the graft. The recipient is called the host. Acute GVHD occurs when the donor’s transplanted stem cells see the recipient’s cells as different and attack them. Chronic GVHD is the most common late problem of a stem cell transplant. Many other late problems are related to GVHD.

Before an allogeneic transplant, the donor’s T cells may be removed from the stem cells. This is called T-cell depletion. T cells are a type of white blood cell that helps control immune response, fight infection and destroy abnormal cells. Removing some of the donor’s T cells can help reduce the chance of GVHD.

You may have to take immune-suppressing drugs for months or years after an allogeneic transplant. These drugs are used to prevent and treat GVHD.

Veno-occlusive disease

Veno-occlusive disease (VOD) happens when small blood vessels that lead to the liver become blocked. VOD is more common after an allogeneic transplant. It can develop in the first few weeks after stem cell transplant and can lead to liver damage.

Defibrotide (Prociclide) is a medicine that may be used to prevent and treat VOD. This drug may be available through clinical trial, special access or compassionate use. Symptoms of VOD can also be managed with other medicines, by lowering your salt intake and by monitoring your fluids.

Digestive system problems

Digestive system problems often occur shortly after a stem cell transplant. These problems happen because tissues in the mouth, stomach and intestines are sensitive to the drugs used in the conditioning therapy. Digestive problems can also be caused by infection or GVHD.

Digestive system problems with stem cell transplant include:

inflammation and sores in the mouth (called stomatitis or oral mucositis)

nausea

vomiting

loss of appetite

weight loss

diarrhea

Digestive problems can be managed in different ways. Your healthcare team may give you special mouthwashes or lozenges and pain medicines for a sore mouth. They may also prescribe medicines to control diarrhea, nausea and vomiting. The healthcare team will also talk to you about good mouth care during and after treatment.

If you have digestive problems, try to eat small meals and snacks. The healthcare team may also suggest nutritional or food supplements if you have trouble eating. For severe eating problems, you may be given a special fluid through the central venous catheter to make sure you get enough nutrition. This is called parenteral nutrition or total parenteral nutrition (TPN).

Skin and hair problems

Conditioning or intensive therapy for stem cell transplant can cause skin rash. This side effect is common when certain chemotherapy drugs, such as busulfan (Myleran [oral], Busulfex [intravenous]), and total body irradiation (TBI) are used. The healthcare team may encourage you to have daily baths or showers to remove bacteria from your skin and lower the chances of skin rash.

Temporary hair loss can also occur after conditioning for stem cell transplant. Hair loss is rarely permanent. It usually grows back within 3–6 months after the transplant.

The parotid gland makes saliva. It is near the ear. It can become inflamed soon after the first or second treatment of total body irradiation (TBI). This causes pain and swelling on both sides of the jaw. It looks like the swelling that happens with mumps.

Inflammation of the parotid gland can be relieved by warm compresses and pain medicines. The inflammation usually goes away in a few days.

Engraftment syndrome

Engraftment syndrome includes fever (not due to infection), skin rash, diarrhea, weight gain and fluid in the lungs (called pulmonary edema). It is thought to be due to the immune system releasing chemicals called cytokines in response to the high-dose conditioning therapy. Engraftment syndrome may occur before the bone marrow starts to work on its own. Steroid medicines may be used to treat engraftment syndrome.

Conditioning or intensive therapy can damage different tissues in the body, including tiny blood vessels called capillaries. If capillaries are damaged, fluids can leak out of the capillaries into the body and upset the fluid balance in the body. This can result in:

fluid retention

weight gain

buildup of fluid in the abdomen (called ascites)

cough

shortness of breath

buildup of fluid in the lungs (called pulmonary edema)

Capillary syndrome usually occurs 1–2 weeks after stem cell transplant. Medicines and other treatments, such as oxygen therapy, are given to treat this side effect.

Lung problems

Lung problems can develop because of the conditioning therapy, intensive therapy or infection. They can also occur if you are given too much fluid after a stem cell transplant. Damage to the lungs can result in the following problems.

Pulmonary edema is a buildup of fluid in the lungs that causes shortness of breath.

Pneumonia is infection of the lung caused by bacteria, viruses or fungi. Interstitial pneumonia is a type of pneumonia that commonly occurs within the first 100 days of a stem cell transplant. It is caused by a tissue reaction. Late interstitial pneumonia is often linked with GVHD.

Restrictive lung disease causes difficulty taking a full breath and a reduction in total lung capacity because the lungs can’t expand fully. It can be a serious long-term problem.

Obstructive lung disease causes difficulty emptying all the air from the lungs when you exhale, which means air is left in the lungs. It can be a serious long-term problem.

Lung problems are common in people with GVHD. The healthcare team will monitor you for lung problems. They may take chest x-rays and check lung function. They may also prescribe medicines to prevent infection right after a stem cell transplant or to treat certain lung conditions.

Kidney problems

Kidney, or renal, problems can occur when the kidneys are damaged. Chemotherapy drugs used in conditioning or intensive therapy can damage the kidneys. Kidney damage can also be caused by antibiotic therapy or the drug cyclosporine (Neoral), which is used to suppress the immune system

Sometimes kidney problems become so severe that they can lead to kidney failure, which is a long-term problem. The healthcare team monitors the amount of fluids the recipient takes in and puts out. They also assess kidney function. They will take measures to prevent and reduce damage to the kidneys as much as possible during treatment.

Graft failure

Graft failure is a rare side effect of stem cell transplant. The donated stem cells are called the graft. Graft failure is when donated stem cells don’t start to make new blood cells or they start to work but then suddenly stop. You may need to have another transfusion of stem cells from the same donor.

Graft rejection

Graft, or stem cell, rejection occurs if the recipient’s body rejects the transplanted stem cells. This is more common in allogeneic transplants, especially when the donor is unrelated or less well matched to the recipient.

Graft rejection is a serious problem. Sometimes it can be treated with growth factors. In some cases, a second transplant can be done.

Heart problems

Heart, or cardiac, problems are not common after stem cell transplant but they can occur. Certain chemotherapy drugs, such as cyclophosphamide (Cytoxan, Procytox), can cause the heart to work less efficiently. They can also cause inflammation of the tissue around the heart (called pericarditis).

The healthcare team may do a multigated acquisition (MUGA) scan to check how well your heart is working and assesses any damage to the heart muscle. MUGA scan may be done before high-dose therapy is given. Chemotherapy drugs that are less damaging to the heart may be used during conditioning. Medicines can be used to treat heart problems that develop after stem cell transplant.

Eye problems

Some people can develop eye problems, mainly cataracts, after stem cell transplant. A cataract clouds the lens of the eye and can cause vision loss.

Eye problems can occur in people who received total body irradiation (TBI) as conditioning or intensive therapy. Chemotherapy and steroids may also increase the chance of developing cataracts. The chance of developing cataracts also increases with age.

Eye problems usually develop a year after stem cell transplant, but they can also happen several years later. Stem cell transplant recipients are encouraged to have regular eye exams.

The risk of developing thyroid problems is quite high when total body irradiation (TBI) is used for conditioning or intensive therapy before a stem cell transplant. Hypothyroidism is the most common thyroid problem. This is a condition in which the thyroid does not make enough thyroid hormone. Symptoms of hypothyroidism include fatigue, weight gain, hair loss, brittle nails, dry skin and feeling cold.

For adults, thyroid function may be checked each year after stem cell transplant. Some people may need thyroid hormone replacement therapy if the thyroid doesn’t make enough thyroid hormone.

In children, not enough thyroid hormone leads to lowered metabolism and slowed physical and mental development. Hypothyroidism in children usually develops 3–4 years after treatment and can become a long-term problem. The healthcare team will check the child’s thyroid function often. Some children may need thyroid hormone replacement every day to regulate the thyroid gland.

In children, developmental and growth delays are long-term effects of total body irradiation (TBI). Slowed developmental and growth occurs because radiation to the head affects the hypothalamus in the brain. The hypothalamus controls the release of growth hormones. Low levels of growth hormone will result in shorter height, shortened limbs and lessened overall physical development. Steroid medicines and GVHD can also affect growth. Treatment with growth hormones may be needed.

Bladder problems

Bladder problems can occur when chemotherapy drugs used during conditioning or intensive therapy scar the bladder wall. This can lead to frequent urination or blood in the urine. Drugs that suppress the immune system can cause recurring bladder infections. Medicines or surgery may be needed to treat bladder problems.

Central nervous system problems

The central nervous system (CNS) is made up of the brain and spinal cord. Several parts of the stem cell transplant process can affect brain tissue, including:

chemotherapy used in conditioning or intensive therapy

radiation therapy to the brain

chronic GVHD

infection

cancer that comes back, or recurs

CNS problems can include damage to the brain (called leukoencephalopathy) and problems with mental, or cognitive, function. CNS problems can result in poor concentration, difficulty with memory and difficulty learning new tasks. CNS problems can develop months or years after stem cell transplant.

Report changes in mental function to the healthcare team. They may refer you for neurological assessment. Many people deal with cognitive changes by changing the way they manage information.

Fertility problems

Fertility problems can occur because of chemotherapy or radiation therapy used for conditioning or intensive therapy.

Some chemotherapy drugs can affect the function of the reproductive organs. Girls who were treated before puberty may have fewer problems with ovarian function and regular menstruation than girls treated after puberty. After high-dose chemotherapy, a woman’s menstrual periods may become irregular or stop. Premature menopause can occur.

Boys who were treated with chemotherapy before puberty may have fewer problems with fertility than boys treated during or after puberty. A boy may become sterile, have an absence of sperm in the semen (azoospermia) and experience premature ejaculation. Conditioning with high-dose chemotherapy can also affect the testicles in men, which can cause fertility problems.

In children, conditioning or intensive therapy with radiation therapy can cause problems with sexual development and fertility later in life. Sexual development may start later or may not progress at a normal rate. This can happen when the hypothalamus, which makes hormones that regulate sexual development, is affected by total body irradiation (TBI).

At any age, TBI can cause the reproductive organs (also called gonads) to stop working in boys and girls. This is called primary gonad failure. Gonad failure and infertility can be permanent. Hormone replacement therapy may be needed.

Talk to your healthcare team about fertility problems. They can suggest ways to help women cope with menopausal symptoms, such as hot flashes. They can also provide information about ways you can preserve your fertility. Women may choose to freeze and store fertilized eggs (embryos) to be implanted after transplant and recovery. Men may choose to freeze and store their sperm for future use.

Second cancers

Other cancers can develop because of the amount of chemotherapy and radiation therapy given during conditioning or intensive therapy. These cancers can include:

acute leukemia

melanoma

head and neck cancers

brain cancer

liver cancer

bone cancer

sarcoma

lymphoma (particularly B-cell lymphoma)

Conditioning or intensive therapy can also cause myelodysplastic syndrome (MDS) later in life. MDS is a group of disorders that affect the bone marrow so it does not make enough healthy mature blood cells. People with MDS have low white blood cell counts, low platelet counts and increased monocytes in some cases. Signs and symptoms include fever, easy bruising and bleeding, infections, paleness and malaise. MDS is not cancer but can transform into acute myelogenous leukemia (AML).

Second cancers can develop several years after a stem cell transplant. Doctors will check for cancer that has come back, or recurred, or any new cancers during follow-up care.

Facing the financial burden of cancer

The Canadian Cancer Society provides helpful information about government income programs, financial resources and other resources available to families struggling to make sense of the personal financial burden they face.